When is the right time?

[Wifey1234]

Hi all,
I'm not too sure what to put as enough info so I guess I'm happy to clarify anything if it needs answering. The OH is T1, has been for a number of years but the hypos are getting worse. In the last 2yrs there's been 1 diabetic seizure and several hypos where they're unconscious, can't swallow, fluid is pumping from their mouth and their breathing is loud and laboured. I try everything I can do bring the sugars up on my own but a few times (like this morning) I end up after 45mins with bloods of 1.4/1.6 and call for help. However today they recovered after a further 60mins and seem stable so I called to cancel the ambulance.
Queue the argument where they're yelling at me the ambulance call will go on record and I have to stop panicking. Am I panicking too early? How long is too long to leave things considering the wait times to get paramedic help? I just don't know what to do anymore. I don't even like leaving the house when they're still asleep incase they aren't alive when I come back.

 

[Jaylee]

Hi all,
I'm not too sure what to put as enough info so I guess I'm happy to clarify anything if it needs answering. The OH is T1, has been for a number of years but the hypos are getting worse. In the last 2yrs there's been 1 diabetic seizure and several hypos where they're unconscious, can't swallow, fluid is pumping from their mouth and their breathing is loud and laboured. I try everything I can do bring the sugars up on my own but a few times (like this morning) I end up after 45mins with bloods of 1.4/1.6 and call for help. However today they recovered after a further 60mins and seem stable so I called to cancel the ambulance.
Queue the argument where they're yelling at me the ambulance call will go on record and I have to stop panicking. Am I panicking too early? How long is too long to leave things considering the wait times to get paramedic help? I just don't know what to do anymore. I don't even like leaving the house when they're still asleep incase they aren't alive when I come back.

Hi,

Welcome to the forum.

Has your other half considered keeping a glucogen hypo kit in the house, if he becomes unresponsive or unable to be treated solids or fluid.?
I must admit. I've never gone that far down the line with a low. But these emergency hypo kits can be prescribed by the consultant in the event of a debilitating hypo..

https://www.nhs.uk/conditions/type-1-diabetes/hypoglycaemia-hypos/

 

[ert]

Hi all,
I'm not too sure what to put as enough info so I guess I'm happy to clarify anything if it needs answering. The OH is T1, has been for a number of years but the hypos are getting worse. In the last 2yrs there's been 1 diabetic seizure and several hypos where they're unconscious, can't swallow, fluid is pumping from their mouth and their breathing is loud and laboured. I try everything I can do bring the sugars up on my own but a few times (like this morning) I end up after 45mins with bloods of 1.4/1.6 and call for help. However today they recovered after a further 60mins and seem stable so I called to cancel the ambulance.
Queue the argument where they're yelling at me the ambulance call will go on record and I have to stop panicking. Am I panicking too early? How long is too long to leave things considering the wait times to get paramedic help? I just don't know what to do anymore. I don't even like leaving the house when they're still asleep incase they aren't alive when I come back.

Does he have a Dexcom G6? Hypo issues is one of the NHS funding criteria. Technology with alarms to monitor blood sugars is a game changer.

 

[Wifey1234]

The OH won't go to the diabetic nurse. They've maybe attempted once to call and get an appointment in the last 2 yrs. There's no pump and no CGM. I'm just at a stuck point where I have no idea what to do for the best or if I'm even doing the right thing.

 

[Jaylee]

The OH won't go to the diabetic nurse. They've maybe attempted once to call and get an appointment in the last 2 yrs. There's no pump and no CGM. I'm just at a stuck point where I have no idea what to do for the best or if I'm even doing the right thing.

Sounds like did the right thing..

You OH realy should be sorting thier own business out with the consultant, if there is difficulty ragarding the hypos?

.. If you OH drives? This could affect the entitlement to hold a licence with the DVLA, too.

 

[NicoleC1971]

The OH won't go to the diabetic nurse. They've maybe attempted once to call and get an appointment in the last 2 yrs. There's no pump and no CGM. I'm just at a stuck point where I have no idea what to do for the best or if I'm even doing the right thing.

Can you pick a time when the OH has recovered from their low and discuss a way forward. My feeling is that the OH is putting a big burden on you and your relationship by refusing either to get a cgm (flash glucose monitoring like FreeStyle libre) which would give them better hypo warnings, or more importantly to change their insulin regime to stop the hypos in the first place.
We diabetics can be stubborn and feel that the likes of nurses and doctors or OHs don't get it and can't help. This is sometimes true. However it is reasonable to point out the stress this is causing both of you, and just how worried you are about their health. Blood sugars that low are dangerous and although your OH would recover eventually when the liver kicks out glucose (via glucagon) this is far from optimal and longer term it will result in the OH losing awareness of going low.
The FSL is prescribed to people like the OH because they have frequent hypos. It is very easy to use and means you would need to do far less finger pricks in difficult situations like hypos.
It also sounds as if something as changed either in the OH's diet or weight perhaps that now means the insulin is working far too well at taking sugar out of his/her blood/ Neither of you need to live like this but it sounds as if you are going to have to be the strong one here and insist on getting in front of the nurse or GP.

 

[sleepster]

Hi @Wifey1234, that sounds like a horrible situation for your OH to be putting you in, I'm curious what their feelings are towards these hypos and the responsibility they're putting on you, is it an issue for them?
I agree with needing to get a glucagen kit, but if your OH won't see their diabetes team they might struggle to get a prescription for one.

 

[Lynz84]

Hi Wifey1234

It absolutely sounds like you did the right thing, but I think you understand the deeper issue here, your OH is in denial about their condition. No check ups, no tech and no care for the condition would indicate they are either not coping or in denial or both.

Maybe pick a moment to chat and explain that you feel the burden of their condition and youre so afraid and ask would they be open to a CGM (like freestyle libre2) and it can sound alarms which can prevent the hypos.

 

[EllieM]

I've had some 999 hypos (twenty-five years ago before 111 was a thing) and they were truly terrifying for my husband. Not so scary for me, because they happened at night and I wasn't aware that I was fitting(as in epilepsy) and he thought I might be dead. (This was precgm and during pregnancy where I was keeping my bgs too low).

So yes, you did the right thing to call an ambulance. But my recommendation is that you make it clear to your OH just how terrifying the hypo was and also how unnecessary it was given modern technology. As a long term (51 years) T1 I have reduced hypo awareness and a cgm has been life changing for me. The alarms mean you get woken at night (or alerted during the day) before you have a major hypo.

And depending on the cgm, you can get alarms sent to a friend/partner's phone so they see if you have a catastrophic low. Though honestly, if your partner gets the alarms that is probably unnecessary.

But if your partner has been in diabetic denial for the last few years he may not even know that cgms exist. For me, the improvement in diabetic life quality is similar to what I felt when I got my first glucometer in my early twenties(yes I'm that old), Pumps have pros and cons, but cgms are simply the best. (OK, they don't work for everyone, but they do for most),

Good luck.

 

[oldhand1]

A cautionary tale. For some reason my insulin requirement has been falling rapidly and is causing some hypos. Yesterday I had a hypo and was in a virtual meeting so left it till reached about 3.1 and the meeting ended , which should have left enough time for treatment. I did find the chocolate but couldn't open without scissors and that was the time I lost it . About 15mins later my wife found me but couldn't persuade me to eat anything. and called an ambulance. Over two hours later with a virtually destroyed room and ending in a grand-mal seizure my son threatened the ambulance service and explained what the situation was. They turned up about 20 mins later and set up a dextrose infusion and I returned to normal. I had some glucagon but was 12 years old. amd my wife wasn't aware it can be used in hypos. Talked to the diabetic clinic today and said they couldn't help with the ambulance service but emailed the GP re resupply glucagon syringe.
The point of the story the ambulance service is currently not fit for purpose and it is best to have your own resources and as most don't have dextrose infusions or the ability to insert the cannula. glucagon is the next best thing. Please dont depend on a service that is likely to let you down take action in anticipation.

 

[david4503]

and although your OH would recover eventually when the liver kicks out glucose (via glucagon)
.

Maybe, maybe not. Depending on the particulars, like amount and type of insulin and food in your system, there’s a reasonable chance that blood sugar will continue to keep falling, right through shock, coma and death. Not anything you want to risk as so many have wisely pointed out. What does OH stand for, by the way?

 

[david4503]

But if your partner has been in diabetic denial for the last few years he may not even know that cgms exist. For me, the improvement in diabetic life quality is similar to what I felt when I got my first glucometer in my early twenties(yes I'm that old), Pumps have pros and cons, but cgms are simply the best. (OK, they don't work for everyone, but they do for most),

Good luck.

Hey, you’re not THAT old. You’re older than you were. Don’t worry, I’ll be sure to email and let you know when you’re THAT old. And while I’m in the mood to quibble, how am I now a Well Known Member? I just got here and almost nobody knows me.

 

[EllieM]

@david4503
OH is other half (ie usually spouse or partner)
Well known member? I suspect it kicks in after a certain number of posts.... (At a wild guess, 50).

 

[Antje77]

A cautionary tale. For some reason my insulin requirement has been falling rapidly and is causing some hypos. Yesterday I had a hypo and was in a virtual meeting so left it till reached about 3.1 and the meeting ended , which should have left enough time for treatment. I did find the chocolate but couldn't open without scissors and that was the time I lost it . About 15mins later my wife found me but couldn't persuade me to eat anything. and called an ambulance. Over two hours later with a virtually destroyed room and ending in a grand-mal seizure my son threatened the ambulance service and explained what the situation was. They turned up about 20 mins later and set up a dextrose infusion and I returned to normal. I had some glucagon but was 12 years old. amd my wife wasn't aware it can be used in hypos. Talked to the diabetic clinic today and said they couldn't help with the ambulance service but emailed the GP re resupply glucagon syringe.
The point of the story the ambulance service is currently not fit for purpose and it is best to have your own resources and as most don't have dextrose infusions or the ability to insert the cannula. glucagon is the next best thing. Please dont depend on a service that is likely to let you down take action in anticipation.

Yikes, that was a nasty reminder to keep the glucagon renewed, instruct loved ones on its use and don't ignore hypos until after meetings.
I'm glad you're OK after that, and glad you sorted the prescription right away!
Take it easy today and buy the wife a bunch of flowers, she did well.

 

[Wifey1234]

Update.
I wanted to thank everyone for their help. Things progressed. Managed to get OH to get a CGM, 2nd night in and they turned it off (I didn't know at the time) as it kept alerting and waking them up! This started a really long and stressful battle from me when I couldn't wake them up as they had a hypo in their sleep and were unconscious. Once recovered a few hours later, a firm chat with a lot of tears from me were had. Promises to change and take better care of themselves, me explaining I'm feeling like a prisoner in the house as I'm too afraid to leave them alone. That eve OH was on night shift, didn't take insulin with them then called me to drop it off. Made a comment 'see, if you left me I'd be dead' then claimed it was a joke when I said how that made me feel.
It's several months later, I've said I want a divorce. OH still isn't looking after themselves, drinking around 20/30units of alcohol a evening at a minimum, eating junk food, ignoring the CGM alerts. Did make an appointment with the diabetic team and then told me when I asked how they got on that it was 'bad' but none of my concern as I never cared anyway. As hard as this all is, as much as my head and my heart are in two different places and completely broken I had to make an awful choice that he will never look after himself and I will continue to break and break till there's nothing of 'me' left anymore.

 

[Antje77]

Hi @Wifey1234 , I'm so sorry to hear that things haven't improved at all.
Very brave decision of you to choose to care for yourself so you can stop breaking and breaking over and over again until there's nothing left. Must be one of the hardest decisions you've ever made.

Please continue to care for yourself, I hope things will start to look much better for you after this painful time is over!
Have a hug.